A Little Less Bad News May Make All the Difference in Schizophrenia’s Impact

Yesterday I read a short piece in Psychology Today (June 2019) called, “A Trick of the Mind.” The article introduced the words, nocebo effect, and the more common placebo effect regarding an experiment conducted by Brad Turnwald, a doctoral student at Stanford University and the lead author on the study they reported on.

The article was about an experiment where they told people that they were either predisposed to obesity or that they had a gene that protected against it. They tested the groups by having them exercise before they were given the genetic information and after. The people who believed that they were predisposed to obesity had a decline in performance on the exercise test after being given the negative information and the people who thought they had protection against obesity performed better.

Most of us are familiar with the placebo effect because we have heard it used in medications studies where people are given a sugar pill and feel better based on their expectations and possibly hope. I had never heard of the opposite, nocebo effect, though. Meaning those who are given negative information/expectations do worse.

When I received the diagnosis of schizophrenia, the doctor said, “I have bad news for you.” For over a decade I had lived with the belief that I had bipolar disorder and no one had ever said that was bad news. I had episodes of psychosis, and when I would fully recover, I would go back into the working world. I traveled and had lots of friends. I hiked. I played racquetball, practiced yoga, and I lifted weights. I had many friends and sat on committees for the city and graduated from an intense year-long leadership program. I regularly took classes to increase my knowledge or for fun.

My life looks completely different now. I have developed an anxiety disorder. I have a lack of motivation (different from being lazy), I can’t seem to find a job that I can manage (I apply for work regularly). I have fewer friends and am involved in far fewer activities, and the activities I am involved in are almost always things I do alone, like take a walk or write in journals. I have lost the motivation to make and keep friends.

I wonder if my psychiatrist had told me, “You have schizophrenia, but it isn’t going to make a difference in the way you live your life,” if that would have made a difference? I wonder if celebrities came out and said, “I have schizophrenia or schizoaffective disorder,” if that would make a difference? I can count the role models who have schizophrenia and are relatively famous (and only famous inside the mental health community, not the general population) on one of my hands. I can’t count the number of times I had read these words from parents when their child received a diagnosis, “Every parents’ nightmare.” I can’t count the number of times I have read that the average life expectancy of someone with schizophrenia is over 28 years less than the general population. I can’t tell you how many times I have heard jokes, seen stereotypes in movies and portrayed on the nightly news. I can’t tell you the number of negative messages I have had to filter through my brain and soul since I received the “bad news.”

I wonder, I really do wonder if the way we presented schizophrenia wasn’t so dire if people’s outcomes would improve? The studies done on placebo and nocebo seem to suggest they would.

 

 

The Words, “Be Kind,” Never Wear Out

This afternoon I was going to a used bookstore where I have $50 in credit from books I sold a month or two ago. I am attending a poetry workshop next weekend, and I offered to find odd books on hobbies for a poetry exercise that I encountered in graduate school and that helped me create my most widely published poem. The poem is about marriage and divorce, and I used fishing lures and tying knots as the metaphor.

The used bookstore is in a very congested part of the city, and we were lucky to find a parking space about five blocks away. As we were crossing at one of the lights, some young men yelled at me, “Hey, can I borrow your poncho?” And then they all laughed, spit food, and slapped each other on the back.

I wasn’t wearing a poncho; it is a handmade purple cover-up that my mom bought me on one of her many trips to Mexico. Nevertheless, I knew the young men were making fun of me.

I know that I’m not a fashion icon. When I was young, I tried very hard to be a unique and fashionable dresser. I often set trends or was way ahead of them. Setting trends and standing out in public is no longer important to me. I am happy I have clean clothes to wear.

When I was back in the car, I said to my husband, I wish I would have said to those young men, “Boy I bet your moms are proud of you for making fun of a woman who is probably her age, who has schizophrenia and often is overcome by symptoms and can’t leave the house.”

I didn’t say anything to those young men. I simply walked by while they laughed and jeered and congratulated themselves on being so funny. The incident made me sad though; it reminded me of how quick we are (within an instant) to judge people without knowing anything at all about them except maybe how they look (the color of their skin, the style of their hair, or how they dress).

As I get ready to eat dinner tonight what I am thinking about is how hard some people’s lives are and how we don’t always recognize or know each other’s struggles. Maybe, someone just lost a loved one. Perhaps, someone just lost their job,  their house, or is in the middle of a divorce, or recently diagnosed with a frightening illness.

I know we see it all the time, “BE KIND.” But how do those two words that are so powerful and said so often they have almost become overlooked play out in our lives? If you find that you easily make fun of people, try to shame them, or make snap judgments about them based on the least significant thing about them (appearance). Maybe you need a refresher course in the meaning of those two simple words. I got one tonight, and I’m not sorry I did.

May is Here!

I loved May Day as a little girl. In grade school, we usually made small paper baskets to hang on doorknobs, and on May 1st, when I got home from school, I would fill the basket with bright purple and fragrant blooms from my mother’s lilac bushes. Then I would go to a neighbor’s house, hang it on the door, ring the doorbell and run. I am sure the neighbors always knew who had left the bouquet, but at the time I thought it was a secret and one that made me feel good.

Speaking about secrets, it is no secret that May is Mental Health Month. I am in the process of sending pitches to editors about different issues involving mental health to raise awareness in any way I can. But just because I am an advocate for mental health, I am not always speaking from everyone else’s experience. Unless I am doing research, every idea I present is my own.

I write, speak, and participate in panels about mental illness. I also follow many other advocates. One thing that is consistent across the board is that I don’t agree with every article, every opinion or every experience I read about schizophrenia. I don’t even agree with the use of language that some advocates choose to use.

Not agreeing with everything is okay, though. There is no way that thousands of people can all be in agreement about everything. I just wanted to throw this out there, so that you know, you don’t have to agree with every post I make to support me, follow me, or think that I am making a difference, and I don’t have to agree with you 100% to think you are marvelous and changing the world.

With those concerns out of the way, I hope you get an anonymous bouquet on your door today, and I hope we can work together to change the dialogue about mental illness.

Happy May Day, and let’s work to raise awareness this month!  Ready? Go!

 

My Stolen Past: Living Life With Mental Illness

I assume that most people who make it to fifty, can look back over their years and feel as if they have lived more than one life. I am no longer the teenager who skipped school frequently and had low self-esteem. I no longer get into cars with other teens who have problems like mine and drive to Denny’s and drink coffee for hours never tipping the poor server who had to refill our cups and clean all the sugar packets off of the table.

I am no longer the young woman who is married but feels like she is playing house. Making meatloaf and garlic mashed potatoes, and trying to find ways to cook venison that will get rid of the gamey flavor. Letting the laundry stack up to a huge pile so that it takes a whole day to do it, but I did it, along with scrubbing the small gray and pink bathroom and the pink and blue tiled kitchen.

I no longer make reservations to fly to Europe or Africa, or South America and then make the trip without cell phones or laptops and somehow miraculously make it to all these countries with layovers and plane changes and cancelations and somehow make it to my parents waiting to pick me up in a place I’ve never been.  And I wasn’t scared. And it all seemed normal. And I never knew that I had skills and was resourceful in ways that many people are not.

I still talk to most people I encounter in public at coffee shops, grocery stores, casinos, hotels, conferences, but I no longer invite them home with me to drink coffee or talk over a glass of wine or six-pack of beer. Where once I was fearless, I have become cautious, frightened, suspicious.

Where and what is the divide that separates one me from the other? It started with a hospital stay, but it didn’t happen clearly on discharge. The changes took years, many episodes of psychosis, hundreds of panic attacks. The changes were a slow erosion of independence, fearlessness, confidence and a carefree sense of adventure.

My mom who now has chronic pain in her back, says that a level of discomfort is her new normal. My new normal is something I am trying hard to get used to. I wave good-bye to a young woman that I never fully realized was talented, capable, and remarkable in so many ways. Before I ever got to appreciate her, she was gone, but not without leaving a memory that calls to me in a thousand ways every single day.

The Truth About “High Functioning”

Lately, I have been participating in a lot of public events. For me, my social calendar is busy. I did a book signing at Barnes and Noble a few weeks ago. Not that many people showed up, but my friends, who are mostly social workers, said I did a great job with my topic of toxic positivity and how that related to the mental health guided journal I wrote (available on Amazon).

Two weeks ago, I was on a mental health panel for a large writing festival in my community. Next weekend I am on another mental health panel, and in June I will be making a presentation about my guided journal at the local women’s museum.

If you read all of this and attended the events, you would think that I am on the verge of possibly creating a role for myself (hopefully a job) in the community. What you don’t see is the effort that my husband makes to make all of these things possible for me.

My husband sorts and packs my medication. He brings extra anxiety medication in case of a panic attack. He packs snacks and water for me and carries them in a backpack. He attends every event with me to make sure that I am okay. He listens to my presentations several times so that I will be comfortable and familiar with the material that I present. He helps me get the necessary sleep, meals, etc. that I need the day before and day of an event. He cooks, cleans, drives, and takes care of all the details of everyday life.

What I am trying to point out, is my success (that I feel wildly grateful for) is the work of two people and the backbone of that work, the foundation of it, is the stuff my husband does behind the scenes.

I can’t even begin to tell you all that my husband has to do so that I can attend the occasional writer’s conference. Traveling anywhere away from home is a huge ordeal for us. It didn’t use to be this way, but we have had to adjust to new symptoms over time.

This post is simply a reality check for people who talk about people who are high functioning. My husband is what I would call super high functioning. But me? I have schizophrenia, and we deal with it as a team, a lopsided one, but a working one nonetheless.

 

OUTSIDER AS ADULT

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(My contribution to poetry month)

OUTSIDER AS ADULT

Like in junior high

Dodgeball

Two captains

My peers

Pick my classmates

One by one

With each name called

I pray

My name will be next

It is painful

This process

Whittling down

Students to

Two or three

I am the final

One standing

Not chosen

At all

But placed

On the second captain’s team

A loss

Before the game

Even begins

 

 

Everywhere I Look a Metaphor

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Our dining room window is floor to ceiling (a slider) and has a view of the bay if you are seated at the table, sitting in the recliner or standing near the window. It is a beautiful view. We often see the water dotted with sailboats, and the sunsets are spectacular when they are pink, or orange.

We have lived here since 2009, and the only window in our home with a good view has a treatment on it that is getting old and makes the glass foggy. It has been foggy since we moved in. So, our amazing view is hazy and unclear unless the window is open.

Today, a window company is replacing the glass in that window. Right now, I have a clear view of the bay. The fog or haze is gone, and I can see the deep blue of the water and the boats that are out sailing in the bay.

It took us over ten years to take the necessary steps to enjoy our water view completely, and it seems like a perfect metaphor for what we so often do in life. We allow the negative (fog, haze) to obstruct our view of the positive. If only we would replace the tapes in our heads that play the scenarios that tell us things are bad, are always going to be bad, or that the next shoe is going to drop, etc.

I am an expert at playing disaster tapes in my mind. I run every bad scenario through my head when I am waiting to hear the news about something, when someone doesn’t call, or when I try something new, or I am waiting for results, etc.

Today, we added value to our property and increased our enjoyment of our condo. The increased value can be something we enjoy several times every day.  Today, I am also committing to adding the same value to my life by trying to get rid of the haze and fog of negative thoughts and see clearly to the good, the positive, the healing, the miraculous that happen all around me every day.

I am not going to spend another ten years with a cloudy view of my world. There is so much more positive than negative each day. The windows now reveal a million dollar view; one my mind can achieve too if I replace the negative talk.

I’m going to sit in my recliner and enjoy an unobstructed clear view of the waterfront, and while I’m there, I am going to run a list through my mind of every wonderful thing that I have in my life right now. The view of a happier future without the haze of negative thoughts is already starting to reveal itself.

A Case Against My Suicide

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I sit and look out over the San Diego Bay. What led me to this Southern tip of the United States involves a road trip to thirty-four states, selling all of my possessions, buying a seventeen –foot van, a decision to move to Abu Dhabi and a family drama that was so vicious and hateful I still have nightmares about it all these years later. Those details are just the small stuff, though. There is a before San Diego. There is a before my husband.

There is a bridge, three bottles of pills and two strangers. I didn’t do it for attention. I wasn’t saying, “Help me, look at me, notice me,” or anything like that. I wasn’t reaching out or thinking about a rescue. I was thinking about putting an end to a fractured mind.

On the bridge, a man gave me his hand and pulled me over the ledge to safety. On the interstate between Tacoma and Seattle, a man stopped after I passed out behind the wheel of my car. The details are blurry because by then the medication was pumping through my body with every heartbeat. The man waited for an ambulance. His last words before they closed the door, were, “Is she going to make it?”

I don’t know the exact day they rushed me to the hospital and spent all night monitoring my heart. I wish I did know the day so I could celebrate my anniversary, my second chance, the beginning of the new. I do know it it has been somewhere close to twenty years ago.

Twenty birthdays I came within minutes of not having. Twenty Christmas stockings that I would never have opened. A marriage to the love of my life where I would have never said, “I do.” There are approximately 7,300 mornings of kissing my husband. There are over 7,000 times I have heard the words, “I love you,” in the morning and before I go to sleep. It is the sunsets and sunrises. It is a morning cup of coffee.

It is hearing the voices of my parents and my brothers. It is doing things for the first time like baking biscuits or doing something the thousandth time like taking a long walk. It is trying new foods like kale or cauliflower pizza dough. It is a being a part of new trends. It is watching social media develop and the ability to send video and emojis on a smartphone.

It is watching my nieces and nephews grow from toddlers to adults. It is the incredible highs like a published article or poem in a prestigious magazine or journal. It is incredible lows and sadness as you watch your country fracture and fight. It is crying at car commercials and stories about lost pets. It is donating to a GoFundMe campaign. It is finishing a novel you are sure you would never forget (and then forgetting it). It is seeing artists express themselves in words, photographs, paint, clay, fabric, neon, and every other imaginable material and way.

It is putting on soft pajamas before bed or spending a day in those same pajamas. It is waking up every morning for over twenty years with the words, “Thank you,” on your lips as a cry, a sigh, and a prayer.